Columbus and the Valley

Local Interventional Radiologists Deliver Minimally-Invasive Solutions

From the very beginning of my new normal, which began on June 11, 2009 when Dr. Ken Ogan used a DaVinci robot to surgically remove my diseased left kidney and 12 lymph nodes, I was left with an incurable case of renal cell carcinoma (RCC) and the stark realization that my job was to seek out the very best medical care I, with my great medical insurance and the shallow pockets of a small business owner, could afford. I had to use whatever medical wisdom was in existence to stay alive long enough to be strong enough to endure a more meaningful treatment if and when it came along.

To date, an initial occurrence and six separate subsequent battles with RCC mets have not managed to take me out and one of those “more meaningful treatments” was available to me locally and I have been fortunate enough to have been rendered NED (No Evidence of Disease) for the 7th time.

Here is a brief recap of the procedures (except for listing all CT/MRI scans, which have continued to occur at about 3 – 6 month intervals, depending on what was going on) and decisions we’ve made that got us to the office of Dr. Nishant DeQuadros:

June 11, 2009: Dr. Ken Ogan at Emory University Hospital performed radical left nephrectomy + 12 lymph nodes (1 positive for RCC).

August, 2009:  Started ASSURE clinical trial (Sutent/Nexavar/Placebo) and ultimately completed trial.

September, 2010: Discovered 2 cm tumor in spine at L-2, and was unblinded from placebo arm of clinical trial. Drawing the placebo arm of the trial turned out to be the good news, in that going forward I would be drug naive, allowing me more access to other therapies.

October 21, 2010: Biopsy of spine determined the lesion is metastatic RCC.

December 2, 2010: Stereotactic Radiosurgery (SRS) at Emory Midtown Hospital in Atlanta

March, 2010: Radiation oncologist says that I’m NED.

August, 2011: Medical oncologist says the tumor at L-2 wasn’t completely killed and it is growing again.

August 19, 2011: Lumbar fusion surgery and fixation with pedicle screws and fusion with bone morphogenic protein at L 1-3. Three weeks post surgery, developed severe (#10) back pain. Treated with time-released morphine and dilaudid for breakthrough pain. These weeks of pain and insomnia were the darkest days of my life. As I write this, I’m having trouble conjuring what the pain felt like. What it was like to be just aware enough to see the little hand of the clock find every click on its way around the dial, yet gladly not aware enough to be forced to remember some of the truly stupid television shows and movies I watched. Alone in a dark room with my ever-present plastic trash can, a box of tissues, a glass of water and a sack full of narcotics. The world looks very different from that room.

October 8, 2011: Some time before 5 a.m., I bent over to remove power plug from wall socket and experienced a dramatic loss of strength on my right side. I contacted my neurosurgeon, Dr. Michael Gorum, early Saturday morning. He instructed me to get to the emergency department immediately. His partner, Dr. Marc Goldman met me and we went immediately to surgery, where he performed a lumbar laminectomy (bilateral inferior L1, complete bilateral L2 and bilateral superior L3). Pain was immediately gone and according to physical therapist, the strength can be regained in legs with therapy. Two major spine surgeries within 8 weeks and a quickly-growing kidney cancer metastatic tumor trying its best to put me down.

October 10, 2011: I was moved by ambulance to the John B. Amos Cancer Center, where I was evaluated for stereotactic radiosurgery to attempt to kill the tumor in my back and returned to my room at the hospital. Got food poisoning (Yes, the day after my second back surgery in eight weeks! Can you believe it?) from a non-hospital meal I ate on Monday evening, so we delayed SRS until Thursday,

October 20, 2011: 16-greys of radiation in a single one-hour treatment aimed to kill the tumor in my spine.

October 26, 2011: Started monthly Xgeva injections to prevent further bone mets.

December 7, 2011: CT scans show NED.

March 15, 2012: CT scans show NED.

June 21, 2012: CT scan showed 3.9 cm tumor on left adrenal gland and slight enlargement of cyst in right kidney.

July 16, 2012: Decided to confer with specialists at M. D. Anderson in Houston, Tex. and met with genitourinary medical oncologist Dr. Lance Pagliaro there at M. D. Anderson.

July 17 – 18, 2012: Had bone scan, brain MRI, CT of chest, abdomen and pelvis with no contrast and a chest x-ray.

July 20, 2012: Met with interventional radiology to discuss needle biopsy of adrenal tumor.

July 25, 2012: Still at M. D. Anderson and needle biopsy of left adrenal tumor confirmed it was metastatic renal cell carcinoma.

September 3, 2012: Started HD-IL2 therapy at Duke University Hospital under care of Dr. Dan George and Dr. Michael Morse. Received 9 doses and creatinine spiked and didn’t come back to my baseline of 1.8, so I washed out. They wouldn’t allow me to finish part B of round one.

October 19, 2012: Had CT of chest, abdomen and pelvis W/O contrast, because of high creatinine.

October 26, 2012: Met with Dr. Pippas and found out adrenal tumor and nodules in kidney are stable. He recommends starting a TKI and plans to confer with Dr. George to determine which one they recommend.

November 13, 2012: Started with 800mg daily dose of Votrient. Took for 2 weeks and high blood pressure and other side effects caused oncologist to reduce daily dosage to 400mg. On 400mg dose for 3 weeks, increased to 600mg dose for 2 weeks and now on 800mg dose daily and dealing with side effects well.

July 11, 2013: CT scan of chest, abdomen and pelvis (W/O contrast) showed 90% reduction in adrenal tumor, no sign of two small right kidney lesions. Have lost 80 pounds due to GI complications with Votrient, but getting along fairly well. Have been able to stop taking Norvasc completely and have halved my daily Coreg dosage. Getting great blood pressure control, likely due to dramatic weight loss. Creatinine also looks good at about 1.5. So, might be able to get CT scans with contrast next time out.

November 1, 2013: CT scan with contrast of chest, abdomen and pelvis showed NED! Have lost 90 pounds due to GI complications of 800 daily mg of Votrient. Creatinine at 1.32 and other labs looks fantastic.

January 14, 2014: Have lost 100 pounds. Blood pressure is rising and with weight loss, this shouldn’t be the case. Hovering at around 180/115. So, went by to see Dr. Pippas to check blood pressure and they decided to triage me and work me in to see the doctor. Warned me that if I’m developing liver toxicity, we’ll have to make some changes. Had liver panel blood work done in lab. Dr. Pippas TOLD me to stop taking Votrient for 14 days and to take 20mg Prilosec every morning for next 14 days. Says he hopes my body will reset and that I can go back on Votrient after 2 weeks. Also, he added back 5mg of Norvasc to my daily meds to see if we can drive back the elevated blood pressure.

January 16, 2014: Got results of liver panel and we’re in normal range, so stopping I’m stopping Votrient for 14 days and taking Prilosec, carvedilol and Norvasc.

February 7, 2014: CT of chest, abdomen and pelvis shows completely stable and normal. Dr. Pippas says I’m NED again. Still tired, so he suggested I go back on nightly CPAP therapy and start some kind of exercise regimen. Also, wants me to maintain good immune system boosting diet and to not gain weight. At 155 pounds, about what I weighed when I left high school. Options presented to Jill and me:

A) stay off Votrient, scan every 3 months for a year
B) restart maintenance dose (either 200mg or 400mg) of Votrient

I asked Dr. Pippas to confer with Dr. Dan George at Duke, a colleague of his and someone who knows my case quite well. Also, I called Dena Battle, who knows this disease better than most doctors on the planet to ask her gut reaction to what doctor has advised. Made decision to stop taking Votrient.

July 22, 2014: CT scan with contrast shows 2.5cm metastasis on left adrenal. Same side as nephrectomy.

July 23, 2014: Discovered 2.5cm adrenal RCC metastasis and Dr. Pippas said surgery would be best option. We left the next day for a long weekend with friends in Destin, Fla.

August 6, 2014: Met with local surgeon Dr. Andy Roddenberry to discuss adrenalectomy procedure. Here’s an excerpt from my blog:

August 21, 2014: Excerpted blog post named “Eight Months:”  There is considerable scar tissue left over from the massive nephrectomy that cost me my left kidney, twelve lymph nodes and a lot of digging around looking for cancer. Additionally, the organs in my body have recognized that there is some stuff missing now that used to be there and they’ve wiggled around and taken up that space in my abdomen. So, scarring, colon, pancreas and a mass of arteries and veins are all congregated in that area, as well as a vascular renal cell tumor that is very much like a 2cm bubble of blood inside the thinnest tissue paper you can imagine. The surgery has been described to me like a person trying to pick up a balloon full of blood with razor sharp pins. One prick of that bubble and I’ve got cancer cells released all over my body and my prognosis suddenly would take a big turn for the worse.

We left Dr. Roddenberry’s office feeling the dread of making a decision to opt for a surgery that, even if successful, would really take me down physically and could significantly compromise my immune system. This is where the story gets really interesting, if you believe in karma. If you believe in a god, or if you worship from the torn front seat of a 1960 rusted, formerly white Chevrolet pickup at the 2nd Dirt Road Church of What’s Happening Now — this was the perfect information for me to hear at exactly the right time….

My friend, Dr. Granville Batte, called me and suggested we might want to meet with new Interventional Radiologist Dr. Nishant DeQuadros. That contact from a friend helped us find clarity. I promise you this: If you are a cancer patient who doesn’t have full faith in your doctor, and/or if you can’t see your a clear view of your feet along the path you have chosen, you are surely miserable. It is bad enough to feel bad, but to feel bad and be weighted down by stress related to your treatments makes the journey that much more difficult.

Here’s what I did to find that sweet spot of clarity before a new therapy: We made an appointment to meet Nishant DeQuadros and my work began. My doctors are my business partners. They provide a service that determines what is wrong with me and the crystal-clear vision backed up with the talent, experience and will to deliver a treatment path that will, at the very least cripple and at the very best in my case, completely shut down the disease process. I, and my insurance company pay them, their professional assistants and clinicians, staffs, technicians, labs, bean counters and hospitals. Then, the real work starts — research.

I fill whatever amount of time I can carve out prior to the first meeting with a new doctor with finding out everything I can about them. Where they’re from. Where they went to school. I seek out their professional writings, look for any feedback I can get from ratings sites, inquire of them with every one of my trusted medical sources and see if they have any kind of social media paper trail I can follow. I also like to find out who their friends are and if I happen to know them, I can’t pick our mutual friends’ brains to find out if they would put their life in the hands of this doctor. Melissa and Jim Thomas are friends of the DeQuadroses. That was a great thing to hear, right at the start.

I got a sweet surprise when I started vetting Dr. Nishant DeQuadros. The more I learned about him and his company, Georgia Radiology Imaging Consultants, the more excited I got. The doctors in this practice are extremely well trained. They do the kinds of procedures that are hard to come by in a community hospital setting. Often these highly-specialized radiologists are doing these kinds of procedures in larger urban or university hospitals. I found out later, just how important it was that these superdocs were here and that one of them was able to take my case.

Jill and I walked into Dr. DeQuadros’ office and a young, handsome guy in a white coat greeted us. We sat down, looked at my scans and we talked about how the ablation would be done. He brings mad experience to the table. At the end of that visit, we had that clarity that is so important.

August 28, 2014:  Interventional Radiologist Dr. DeQuadros and Anesthesiologist Dr. Mark Pinosky performed a microwave ablation of my left adrenal and its encapsulated RCC met. Complications during procedure caused Dr. DeQuadros to have to make four passes to get enough of a burn to completely finish the job. Disruption of my adrenal gland and the presence of the RCC metastasis caused a 300/200 blood pressure spike during the procedure. Because of the fear of cardiac damage from the BP spike, I spent the night in an intensive care room, so I could be monitored.

In my intensive care room the next morning after the procedure, I learned how serious the situation became during the minimally invasive operation. When they saw that I was having a major hypertensive reaction, Dr. DeQuadros ran a central line to my heart from behind me left knee, and, along with Dr. Pinosky, they monitored my blood pressure with every beat of my heart, utilizing drugs and procedures they had at their disposal to control wild blood pressure swings while still completing the procedure.

August 29, 2014: I was released with an appointment to see Dr. Shane Darrah to determine whether the high blood pressure had damaged my heart muscle.

September, 4, 2014: Saw Dr. Darrah and had stress test.

September 8, 2014: Had echocardiagram in Dr. Darrah’s office. It was determined that no heart damage resulted from blood pressure spike during microwave ablation.

October 2, 2014: CT scan with contrast (80% of dose). Still NED.

February 12, 2015: CT scan with contrast (80% of dose). Still NED.

The microwave ablation therapy I received here in Columbus was one of those cutting-edge treatments that can extend the life and protect the quality of life of a patient. In this process, I appreciated the candid advice given to me from Dr. Roddenberry that I should seek another, less invasive option that wouldn’t expose me to such a large, dangerous surgery that might negatively impact my compromised immune system. The incredible truth is that the huge surgery and the minimally-invasive microwave ablation should yield the same results (if perfectly executed). One would have cost me six days in the hospital and another six weeks of recovery. The other was performed on a Thursday and I was back in the office on Tuesday. I would have returned to work on Monday, had it not been the Labor Day holiday.

The list of vascular and interventional radiology treatments that are offered here by Drs. DeQuadros, Hart and Vo is quite long. If you receive a diagnosis that might be remedied by one of the treatments from this list like I did, you’d be wise to do a little Googleing to see if you might be better served by this type of care. Here’s the best part: When the therapy is finished, you can go home and sleep in your own bed. That is a mighty good thing.

Cancer Flip Book

Thanks to good friend, David Fletcher, I just received 158 pages that chronicle my life with cancer. Jill and I, after consulting with our medical oncologist, Dr. Andrew Pippas, have decided to make the long trek out to Houston, Tex. for a consultation with their genitourinary team. I hope to be able to meet with Dr. Eric Jonasch and Dr. Chris Wood at M. D. Anderson Center.

The medical records department at the John B. Amos Cancer Center has put together the five items that were requested from M.D.A.:
• Latest lab reports
• Radiology reports from day one to current
• Pathology reports from day one to current
• Treatment reports from all procedures
• Last four doctor’s notes from Dr. Pippas

158 pages later, I am holding my cancer life in my hands. Charlotte, the handsome sounding woman on the other end of the phone in Houston in the genitourinary department at M. D. Anderson Center asked me to fax those pages. She says they’ll ponder them in a team setting and either accept our requests for doctors with whom we wish to confer or they will, based on my case, assign us to physicians who can best meet our needs.

So I loaded up the fax machine with the first few pages and stood there, propped up on my elbows and relived the last three years of hell in chronological order, beginning with the diagnosis from Dr. Mike Lake, and then on to paperwork from Dr. Ken Ogan at Emory Healthcare, who was the surgeon who performed the left radical laparoscopic nephrectomy in June, 2009.

A sympathetic wave of nausea struck as I remembered the pain I was in. It was partly physical, but it was mostly emotional pain in my mind’s eye as I headed into surgery a little over three years ago. Like a old school flip book, as the fax machine thumbed the pages into the hopper, I saw an animated, jerky, freeze-framed flashback of what it has been like living with cancer.

I’m a big fan of the Fox Network TV show, “So You Think You Can Dance.” One of the 20 finalists competing for this season’s title is a young man from Duluth, Ga. whose dance specialty is called animation. Here’s a clip: http://www.youtube.com/watch?v=bkTgg-709D4

Watching him dance is like watching an old newsreel at the movies when I was a kid. His eerie moves are like nothing I have ever seen and this herky-jerky feeling I get when I watch him is the way I felt today as those pages slid through the fax and on their way to a place that I hope can heal me.

I’m fairly sure that I’m going to need at least one more surgery. Two days ago I was outside our office talking to my dad when my cellphone rang. “Mike, this is Mac Molnar. Mike Gorum and I are sitting here looking at your CT scans and I want to talk to you,” he said. Basically he told me that he didn’t want to do the surgery and that it made a great deal of sense to go back to the urological surgeon at Emory who did my nephrectomy.

This is what I love about the incredible care I’ve received here in Columbus during my illness. I love a doctor who will tell you that he is not the best person for you for a particular procedure. Mac has operated on me twice. He was the “gateway” general surgeon who got neurosurgeon, Dr. Mike Gorum access to his targeted spot at my spine. That seven-plus hour surgery was intricate and difficult. They did beautiful work in a valiant effort to rid my spine of the tumor that had ravaged it at the L2 vertebra. When Mike realized that he couldn’t completely take the tumor without killing me right there on the table, he stopped and they finished up. These guys are the best at doing huge, difficult surgeries and they also have the balls to say when there is either another surgeon or another type of treatment that needs to be brought to bear.

In my case, Dr. Gorum realized that stereotactic radiosurgery was what I needed to kill the tumor and eight weeks later, after an emergency laminectomy by Mike’s partner, Dr. Marc Goldman, not only was the tumor eradicated from my spine but my legs and my ability to walk were spared. I owe these men and all the caregivers who have touched me a great debt of gratitude for preserving my way of life.

So here we are, three years out from my original diagnosis, nine months from my last back surgery and eight months out from the second stereotactic radiosurgery treatment to my spine. I know I have a 3.9cm tumor on my left adrenal gland that is almost certainly my third round of metastatic disease. In my last post, I shared that I have high hopes for a good outcome from a surgery to remove the offending gland at the hands of just the right surgeon.

I’m really not afraid of this surgery. I believe I have a good chance to move on from it. What I haven’t shared is the thing that I am most afraid of. There has been an apparent simple cyst on my remaining right kidney, Strainer, that seems to have decided to grow. The fact that it is larger worries me. If I find out that I’ve been dealt the worst possible hand and that I have bilateral kidney cancer, then I need to know that sooner than later. I will have to have kidney-sparing surgery at the very least and I don’t even want to ponder what might be the worst outcome of that finding.

Dr. Molnar says that in his estimation, “going in through the front is risky because you’ve already had one big surgery from that angle and things might not be where they’re supposed to be” due to adhesions, scar tissue and the general disturbance of them rooting around looking for suspicious lymph nodes during my Emory surgery. But, he said, going in from the front would give my surgeon the opportunity to “get a look” at Strainer and allow them to biopsy that tissue to find out what we’re dealing with. Going in from the back would be an easier way to get to the adrenal gland, but I would suffer a lengthy recovery period. By doing it that way they’d have to make another incision and basically do two surgeries under one anesthesia to see what is going on with Strainer.

So, we’re packing up for a short in time but long in miles road or plane trip. Charlotte at M.D.A. says that after they get my files, they’ll be able to schedule an appointment after two days of study. That gets me out to Monday. I hope I’ll hear from her on Monday with a date that we can be seen.

I apologize for the length of this post. It is obvious to those of you who are regular readers of this blog that I am scared shitless. I seem to be long-winded when I’m worried, and in spite of my little dose of Celexa, I’m more than a little on edge.

So, what we need right now is more cowbell! Come out tomorrow night, Friday, June 29 at 6 p.m. in the 11oo block of Broadway and join a big bunch of us at https://www.facebook.com/UpTownDrumCircle. It is going to be hot as a two-dollar pistol, but the beat will take you someplace cool! I promise.

 

 

NED Again, Thanks Be to God!

If you read my blog, you have heard my declarations of how damn good it is to be able to get great cancer treatment here at home. You’ve heard me say how much I appreciate the John B. Amos Cancer Center, all the people who work there, and most specially Dr. Andy Pippas and his right hand, Cindy Ivey.

Here’s another story that illustrates just how incredible the care I’ve received here has played out: You all know how important the MRI scan that I received on Tuesday was. It has been five months since my third back surgery (the one Dr. Marc Goldman did that stopped the chronic pain and essentially kept me out of a wheel chair), and about 7 months since Dr. Mike Gorum and Dr. John Cabelka  (and a host of other physicists, technicians and support staff) attempted to kill the renal cell cancer tumor in my spine. This MRI was huge! This is probably the most anxious I’ve been, because a good report would mean I might have a chance at significant, disease-free survival. On the flip, a bad report would signal the beginning of some negatively life changing other procedures or nasty drug side effects and a likely significant shortening of my potential life span.

This is how much I love the care I’m receiving here at the hands of medical professionals who also happen to be my friends. Mike Gorum has a vested interest in my life. He has performed (along with Dr. Mac Molnar) a huge spinal operation on me that culminated in the rebuilding of the vertebral body at L-2. He has watched me suffer with crippling pain and slowly begin to regain my strength and vitality.

Mike was finished with his work on Tuesday, fairly early in the day after a very early start, but he came back to the hospital to be in the room in which the technicians were administering my MRI. He literally watched the scans while they were happening. He sent me a text, “MRI clean.” That evening, Mike and his wife, Tammy, met me at Ride On Bikes and they rode with me for my first bike ride in over a year. I tried to tell them how much it meant to me to have such care and concern at a time when I may have most needed it in my life.

That is what getting treatment at home looks like. These medical professionals are our friends. They live here. They rear their children here. We see them around town at plays, restaurants and music events. If you are asked to support local medical charities, please dig deep. We need a medical school here, we need a new women’s and children’s center like the one being planned at Columbus Regional Healthcare System, we need expanded facilities at St. Francis hospital.

We have taken advantage of seeking second and third opinions (with the urging and blessings of Dr. Pippas), but if at all possible I want to be here for treatments.

I’ll get off my soap box now and tell you what I just read in my MRI report. My spine is in perfect alignment, held in place with two titanium plates and four screws, for which my insurance paid $43,000, if you can believe that! There is no evidence of metastatic disease! There are no soft tissue abnormalities present near my spine! In short, it appears the stereotactic radiosurgery that they didn’t get right at Emory, was administered perfectly here. The tumor in my spine appears to be dead and new bone is growing, thanks in part to the monthly injections of Xgeva, (http://www.xgeva.com/WT.mc_id=GooglePaidSearchBrandXgevaURL&WT.srch=1) a drug that should strengthen my bones and make it more difficult for the establishment of another renal cell metastasis.

Here is a snapshot of the history  with Renal Cell Carcinoma:

Mike Venable

59 years of age

• June 11, 2009 radical left nephrectomy + 12 lymph nodes (1 positive for RCC)

• August, 2009 ASSURE clinical trial (Sutent/Nexavar/Placebo) Ultimately completed trial.

• September, 2010 discovered 2 cm tumor in spine at L-2 and unblinded from trial (Placebo arm, thank God, but I knew that all along)

• October 21, 2010 Biopsy of spine determined the lesion is a metastatic RCC.

• December 2, 2010 Stereotactic Radiosurgery (SRS) at Emory Atlanta (went for for CT simulation on 11/17/2010)

• March, 2010: oncologist says that I’m NED.

• August, 2011: Oncologist says the tumor at L-2 wasn’t completely killed and it is growing again.

• August 19, 2011: Lumbar fusion surgery and fixation with pedicle screws and fusion with bone morphogenic protein at L 1-3.

• Three weeks post surgery, developed severe #10 back pain. Treated with time-release morphine and dilaudid for breakthrough pain.

• Awake at 4:30 a.m. on Saturday, October 8, 2011 and squatted down to remove power plug from wall socket. Complete loss of strength on right side caused me to fall over to my right.

Got to bed and called my neurosurgeon early Saturday morning. He instructed me to get to emergency department immediately. His partner, Dr. Marc Goldman met me and we went immediately to surgery, where he performed a lumbar laminectomy (bilateral inferior L1, complete bilateral L2 and bilateral superior L3). Pain was immediately gone and according to physical therapist, strength can be regained in legs with therapy, which I’m doing now.

• On Monday, October 10, I was moved by ambulance to the John B. Amos Cancer Center, where I was simulated for stereotactic radiosurgery to attempt to kill the tumor in my back. Got food poisoning from bad hotdog on Monday evening, so we delayed SRS until Thursday, October 20. 16-greys of radiation in a single one-hour treatment.

• Scans in December, 2011 show NED. Got second opinion on December 30, 2011 from Dr. Janice Dutcher at Roosevelt Hospital in New York City, NY. She advised to stay course, but would administer HDIL-2, if we wanted to try it.

• Got third opinion from Dr. Dan George at Duke University Hospital on January 11, 2012. He recommended to stay the course and said he was “guardedly optimistic” about my long-term disease-free survival.

• Scans in March, 2012 show NED.

Thank you for all your continued prayers for me and my family. I am a walking, breathing, living example of the power of prayer, good medical treatment and great attitude. Sorry for the length of this post, but I know you want to know about my latest scans.

Peace…

 

The Young Bull says to the Old Bull…

Friday is the day Dr. Pippas does his administrative work. I don’t know how the man gets everything he has to do…done, even with a Friday to tie up loose ends. Since Friday is his paperwork/research day, I was hoping he’d be able to sandwich in a phone conversation with me about our trip to Durham, NC to see Dr. George.

He returned my call within minutes and I told him Jill and I had heard what nurse friend Sandy Gunnels called a “diametrically opposite” plan of action from the one I had heard from Dr. Janice Dutcher on our visit to see her in New York City. Renowned renal cell specialist, Dr. Dutcher says that HDIL-2 (high-dose interleukin 2) is our next-best course of treatment.

Renowned renal cell specialist Dr. George, at Duke University Hospital, says HDIL-2 is way down the list of things he’d recommend we do right now.  Dr. George was emphatic: “HDIL-2 will not keep this cancer from returning if that is what it wants to do. If you don’t have disease anywhere other than your spine, and if it returns there, you have a better chance of controlling it with a TKI (tyrosine kinase inhibitor). Hands down,” said Dr. George.

Dr. George continued: “HDIL-2 could kill you. It could create a cardiac event. Those things are rare, but possible. What it will do is ravage your body, potentially causing organ damage and positively causing great suffering.” Basically, he doesn’t see any value right now in putting us through this toxic treatment.

As Jill and I sat there and as I realized where our conversation with Dr. George was going, I felt the air leaving my body. The palpable let down of a fight reflex when your attacker has either stood down or walked away. There was an immediate transformation in me from fighter to waiter, and not the kind of waiter that gets a tip for good service. The kind of waiter that sits at a bus stop on a graffiti-covered bench in the cold, waiting for the next mode of transformation (intentional use of wrong word) to move you toward a tangible cancer therapy.

I’m like the old bull in one of my favorite old jokes and the vulture on a great T-shirt: A young bull and an old bull were standing on a hillside looking over a valley pasture of grazing cows. Young bull says to the old bull, “Why don’t we run down the hill and screw one of those cows?” The old bull says, “Why don’t we walk down there and screw all of them.” The vulture on the T-shirt is standing on a limb, high up in a tree, looking extremely vulturish. The caption says, “Patience, my ass, I want to kill something!”

I want a plan. I want it to be as aggressive as I am. I don’t see myself being comfortable waiting. As I said in my last post, I’m locked in a perpetual state of advent.

The really good news is that Drs. Goldman, Gorum and Cabelka and a host of other physicists, pharmacists, physicians, nurses and techs have done great work for me. The tumor is my spine is gone. There is nothing visible anywhere in my body that makes my medical team concerned that my life is being threatened. I can hear you saying, “why don’t you just quit your bitching, go back to your life and be happy you don’t have to take these awful drugs!” The answer to that is, “I know this cancer WAY better than you do. I now how sneaky it can be and I know how quickly it can make you dead if it decides to light up and run.” This knowledge is what makes me restless.

I have talked to Dr. Pippas about a third opinion — a “tie-breaker.” We’re discussing that now and I told Dr. P that I think this next opinion should be made without me in the room. I want to send my records to another RCC specialist and have them weigh in without my large, vocal, demanding personality in the room. Jill thinks my running commentary could have skewed the conversations with Drs. Dutcher and George. She’s probably right. She usually is.

So, for a short time, we’re back to waiting. Dr. George will call me within two weeks and let us know if there is some type of new scan available that is super high-definition with kidney friendly contrast media. That would be great, if we could have some type of super-scan that will once and for all determine if there are any bits of cancer in other areas of soft tissue or anywhere else in my bones. If we have that scan and it comes back negative, I can relax and be OK with another wait.

I will NOT, by God, be standing here flat-footed, doing nothing and be taken down by this cancer. If this bitch wants me, it is going to have to come at me with a bloody mace in one hand, a butcher knife in the other and a mouth full of bloody teeth. If it gets me, I’ll be out of bullets, with no fingernails left. I won’t be sitting in this chair waiting to hear the tap on my front door. You can take that to the bank.

 

It Took a Village (Repost)

FYI: This is a repost of my last blog post that many of you didn’t get a chance to read before our hosting company (justhost.com) dropped the ball and left our website inaccessible. They have also said they don’t have a backup after Nov. 23, which means my last two posts have disappeared into nowhere, along with all the great comments we’ve received from many of you. Starting on Monday, we’ll be looking for another hosting company. Here is my latest post:

Oncologists, neurosurgeons, radiation oncologists, family doctors, nephrologists, nurses, techs, physicists, engineers, pharmacists, insurance companies, church family, immediate and extended family and a hoard of friends numbered seemingly like the sands on the seashore — individually, in prayer groups, on renal cell internet forums and on the street. This is my village.

As just a sneak peak at what I have to tell you tonight, I messaged Dr. Mike Gorum late this afternoon to thank him for his good work (good work, that in concert with his partner Dr. Marc Goldman, likely kept me from writing this message in a wheelchair instead of my comfortable leather chair). He said the most un-brain-surgeon-like thing: “You don’t need to thank me, you need to thank a bunch of physicists, engineers and other doctors that work behind this scenes. I just stand out there and take all the credit.”

After the rather curt dismissal we received when we went for follow up at Emory University Hospital in late summer, we began to assemble our village here in Columbus. Drs. Andy Pippas, Mike Gorum, Marc Goldman, Clark Gillett, John Cabelka, Doug Ciuba, Raj Alappan and a host of their PAs, nurses, techs, engineers, physicists, pharmacists and all the advice and drugs they rendered and prescribed. Also, the John B. Amos Cancer Center, The Medical Center, Hughston Hospital and Atlanta Falcons Physical Therapy.

My love fest with our village started from the moment I announced that I had been diagnosed with kidney cancer. It crescendoed on March 19 of this year at the American Cancer Society’s Crystal Ball, where I was this year’s honoree. That was one of the greatest nights of my life. It was very much like being able to attend your own funeral while you are still alive (minus the DJ, band, silent auction, liquor and dancing).

Having cancer sucks, but getting the drop-to-your-knees-and-cry benefit of learning how much you’re loved by your community is a gift that will keep giving until I draw my very last breath. It has been life-changing for me and my family. If you don’t already know how much I love all of you and how much we appreciate each gesture of concern and encouragement, let me be very clear. Our village has healed us, sustained us, fed us — physically and spiritually — cried with us and shouted for joy with us and this has been what has sustained us through dark hours of pain, fear and suffering.

I spent all day yesterday at the JBACC getting fluids. Went back this morning at 7:30 and they stuck another needle in my right arm and kept on pumping. We reported to The Medical Center a little after 10, where they checked my creatinine (1.8, not great, but not bad enough to keep them from using contrast media to enhance the scan), fed me another cup of delicious barium and slid me onto the CT scanner table.

Then it was back to JBACC for an after-scan flush of another bag of fluids to protect Strainer (in case you don’t know, Strainer is the name of my right, remaining kidney). I texted Dr. Pippas’ nurse to let her know that I was in the cancer center, and that it sure would be nice to be able to get some feedback from Dr. P about my scan.

She texted me back and basically said, “Come on down.” Only, it was really up….to the 3rd floor where the team of top-notch medical oncologists ply their profession. So, Jill and I headed on up, signed in, got triaged and settled in to get this very important call to come in to see the doctor.

We were called and made our way back to a treatment room to wait to see Dr. Pippas. After a few minutes, I could hear him dragging my rather voluminous chart out of the door pocket and could see the door handle turning, signaling the imminent delivery of the news we’ve been to anxious to hear.

After a few formalities and the typical barrage of questions from my favorite mad scientist, he opened the three-inch-thick folder and drew out two sheets of paper that represented the salient facts gleaned from the scan that I had had only a few hours earlier.

“This scan is completely clear. There are no metastases in your lungs, abdomen or pelvic area,” was how Dr. Pippas characterized the information. Hallelujah! This is going to be a great Christmas.

In my yesterday post, I outlined two possible outcomes of this scan. This was the one we were hoping and praying for. No Evidence of Disease. NOW, the wolf is still at the door. We will have another MRI scan in about two weeks to determine once and for all that the stereotactic radiosurgery has effectively killed the tumor in my spine.

The MRI could also see if there are any other small soft tissue tumors in that general area. The bottom line is that we (our medical village) still thinks we need to pursue some type of systemic therapy to go after any other cancer cells that might be floating around inside of my body.

Today I heard from a representative from Dr. Janice Dutcher’s office in New York. I have already heard from Dr. Dan George at Duke. After we get the MRI results in mid-December and correspond with those two docs via email and/or phone, we’ll know whether the HDIL-2 systemic therapy is feasible and if so, will schedule it either in New York or at Duke. For all sorts of reasons, I am adamant, and Dr. Pippas agrees that I am not going to settle for any kind of tyrosine kinase inhibitor (read it and weep: http://www.ncbi.nlm.nih.gov/pubmed/19689244) before I know without any doubt that HDIL-2 therapy is completely off the table for me.

So we press on. Happy for the gift of this news so that we can brush cancer aside and enjoy this advent season, watchful, hopeful with the scent of Fraser fir (named for the Scottish botanist John Fraser) in our nostrils.

I am not cured. The chances are high that this cancer will come back. We will remain vigilant, hopeful and keep a fresh can of whupass handy if we need it. For now, we are blissful! I can concentrate on getting back the strength I’ve lost and try to figure out how to properly thank my village for standing by us for the past two and a half years. This time has changed me.

I didn’t intend for this to be a thousand-word post. In fact, when I finish this sentence, it is at 1,104 words. I will shut up, now.

Goodnight!